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Saturday, February 27, 2016

With Rare Disease Day just around the corner, I wanted to share a little of what it's like living with a child with Idic 15/Dup15q Syndrome using photos.

Sometimes the easiest way to describe something is with a
photo. I could write this ridiculously lengthy description of our day-to-day
life, but I can't imagine anyone, including myself, who would want to read it.
But I do want to somehow describe what it's like to live with a child with a
rare condition.

I don't share these photos to gain pity. I really don't want
anyone's pity. I don't share these photos to show how hard and horrible our
life is, because our life is quite the opposite. It's filled with love and
wonder and an appreciation for all things irreplaceable, such as family and
friends. We laugh and smile everyday just like anyone else. We just have a few
more... challenges, than the typical family.

So I share these photos to help others gain an idea of what
it may be like to be in our shoes. To live with the "challenges" we face, and most importantly, to gain awareness of such rare conditions as
Idic 15 Syndrome.

3rd Echocardiogram

4th or 5th EKG. Can't Remember

Brain MRI

Fighting Infantile Spasms

Research

Always watching her video baby monitor

To help her anxiety in busy public places

Helping her learn how to hold her bottle by giving her something to feel